Wanting to be me, not ME

Inside I am still meSomewhere, hidden withinThe tattered shreds of my tortured mindThe limp empty, useless limbsWhich lay motionless, immovable, numb, unfeeling,Refusing, absolutely, to conform with my will,Portray a statueThrown upon its back, helpless, useless, broken, Unable to rescue itself,Stuck in whatever pose, it was accidentally arranged in.Moving takes time.How long I cannot say.My body, bathed in sweat, is far too hot.Uncomfortably saturated, itching, burning,throbbing,My skin crawling with irritation and indescribable sensations.I am desperate to move.I cannot call out.I cannot wipe my face, bejewelled with sweat,I cannot move my twisted body, my awkward limbs,I cannot help my self at all.I cannot even think, So blank my mindMy head and neck twisted to one side, placed at an unexpected angleTo avoid the worst pressure on my skull,To try and prevent the intense agony from piercing my brain,From invading my head, my jaw, my eye, my spine,I feel strangely calm,Almost peaceful,My breathing rhythmic with sleep,Despite my consciousness.I long to drift away back into oblivious unconsciousness,To rest and wake whole limbed and happy.It is not to be.The monster that has taken over my controlWill not let go its clutches,No matter how hopeful or resolute I amTo defeat it and fly free.Another day, I wake into paralysis,My beloved up, long hours before,Moving in a different rhythm, to a different tune,Separated by degrees,From the world we promised each other.He waits for me to wakenAnd begin the long process to freedom From the prison that my paralysed self has become.How do I get to the outside?How do I connect from the inside to the outside world?How can I give him a glimmer of my true self,When all inside is broken and disconnected,Dismantled, swollen, engorged with pain?Again and again,I try in vain to listen, to smile, to understand, to seeBut how can I be truly loving, present, here, for him,When every sound he makes attacks me,Wounds me, knifes me in my ears, my back, my guts?When every movement, big or small, fast or slow, loud or quiet even,Confuses my brain and jangles me all over,Causes me to groan or flinch or shout with irritation,When my facial muscles are palsied and frozen In a blank, empty, impassive expression,Unwilling to comply with a grin.When I simply cannot focus my mind, despite my best intention,Beyond the cacophony of distress, Permeating my senses,From every cell, from every level of pain, From every millimeter of numbness, irritation, weakness.When my eyes cannot see out beyond the inside,Through the darkened, unfocused fog and sun glassesI cannot even see his beautiful face,His joy, his love, his kindness, his excitement, his tender presenceOr comprehend what he is trying to say to me,When one word, spoken too enthusiastically,Will cause me to wince with the intensity of pain it causes,To my ears, my head, my stomach.When I cannot interact because the paralysis, still grips me,Still remains entrenched within all of me, Despite it may have allowed me some brief actionSome limited movement,Before crushing me back down, even deeper, further away, inside myself,So that I feel like less than a stick-picture innerly,In a large, misshapen bodyBloated by steroids,Bound by invisible chains,An invisible, desolated alien, in my own life,Always wanting to express and beMeNot ME.

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A REVIEW OF THE 2018 EDITION OF THE ME ASSOCIATION CLINICAL AND RESEARCH
GUIDE FOR ME/CFS
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